Developing a community to mitigate caregiver burden in inherited retinal diseases using AI labelled structured and unstructured data

该项目包括为遗传性视网膜疾病（IRD）患者的护理人员创建一个在线社区。患有IRD的人会丧失视力和失明。这种疾病通常表现在年轻人身上，尽管它也可能影响老年人。家人和朋友为这些病人提供了大量的支持，是无偿的。由于它影响年轻人，不是一种致命的疾病，将导致终身护理的必要性，通常来自父母或年长的亲戚。这种照顾通常是无偿的，与有偿工作和责任相冲突，并导致内疚、压力、抑郁和心理问题。在线社区将允许护理人员与其他人交流，分享他们所经历的问题和成功。与职业护工不同，无薪护工没有休假的奢侈，没有专业课程，也没有高级护工/经理为他们排忧解难。与病人不同，他们没有全科医生或医疗保健专业人员可以直接解决他们的问题。这意味着护理人员所遭受的许多问题都是隐藏的，并且没有得到解决。护理小组是有帮助的，但需要抽出时间来照顾孩子或从事有偿工作。匿名网络论坛很有帮助，因为它们更容易访问——然而，回应的质量和及时性不一致。回答问题的人如果没有经历过照顾者的负担，就不太可能提供有用的建议。该项目将提供一个更丰富的社区，用户可以通过查看其他人的“负担分数”来自我评价，这样用户就可以选择将注意力集中在与自己处境相似的人身上。

The project involves creating an online community for carers of people with inherited retinal disease (IRD). Persons with IRD suffer from vision loss and blindness. Often, the illness manifests itself as a young adult, although it can affect people in older age. Family and friends provide a great deal of support for these patients are unpaid. As it affects younger people and is not a fatal disease, will result in the necessity of lifetime care, often from parents or older relatives. This care is usually unpaid, conflicts with paid work and responsibilities and results in guilt, stress, depression and psychological problems.The online community will allow carers to communicate with other and share problems and successes that they experience. Unlike professional carers, unpaid carers do not have the luxury of taking time off, have professional courses or have senior carers/managers to unburden issues. Unlike patients, they do not have GPs or healthcare professionals who can directly solve their problems. This means that many issues that carers suffer are hidden and are unresolved. Carer groups are helpful but require taking time off care or paid work. Anonymous internet forums are helpful as they are more accessible - however, the quality and timeliness of responses are inconsistent. A person replying who has not been through the burden of being a carer is less likely to provide useful advice. The project will a richer community where users are self qualify responses by seeing other peoples 'burden score' so that users can choose to assign their attention to people in similar situations to themselves.